Addison's SOS - Sanctuary of Support

Addison's SOS - Sanctuary of Support for people with Adrenal Insufficiency and Addison's Disease

Here when you feel lost, concerned, puzzled or poorly.

Choose the section that suits the way you are feeling today and find out the support we have on offer for you.

Feeling very unwell

Call 999 for help and follow the instructions on our emergency page if have any of these symptoms

Extreme weakness, feeling terrible, vomiting, headache, light-headedness or dizziness on sitting up or standing up, feeling very cold, uncontrollable shaking, back, limb or abdominal pain, confusion, drowsiness, loss of consciousness.

The Emergency Injection for the treatment of Adrenal Crisis

Sick Day rules for general illnesses

COVID-19 Guidance

Preparing for a hospital admission

Visit Mind's Urgent Help Page if you feel unsafe or need urgent support with your mental health.

Currently in Hospital

Visit our hospital admission page and ask for a friend or relative to support you by:

- Explaining you are steroid-dependent, show your Steroid Emergency wallet card, surgical guidelines or other relevant ADSHG publications.

- Bring in a hospital folder, containing info inc your current medication list and ADSHG publications.

- Bringing in salty snacks or other items that help you feel comfortable.

- Visit our online forum for support and to talk things through.

Take some time out to read the many personal stories from people with adrenal insufficiency in our Blog or have a read of our latest Magazine.

Coping with difficult feelings or emotions

Visit Mind's Urgent Help Page if you feel unsafe or need urgent support with your mental health.

Read about your wellbeing and adrenal insufficiency

Coping with emotional stress

Reducing the stress of a long-term condition

So just how do you tell your family & friends

Talk to people who understand through The Wren Project's listening service

Words for feeling better or worse

Read advice from Mind about how to manage loneliness

Read personal stories from others on our Blog or chat direct on our online forum.

Awaiting a diagnosis?

If you believe you might have adrenal insufficiency, talk through your symptoms with your GP. Take our Diagnosing Addison's Disease: A Guide For GPs with you to help shape the conversation.

Unsure which type of adrenal insufficiency you have? Want to know more? Read our introduction to Addison's disease and adrenal insufficiency.

Try browsing our A-Z which is packed with all sorts of useful information about adrenal insufficiency, or type a word into the search box in our menu to find related topics.

View and download for free all the ADSHG publications

The Patient Advice and Liaison Service (PALS service) offers confidential advice, support and information on NHS and health-related matters.

Wanting to improve the care you receive from healthcare professionals?

Coping with your GP practice

Share and discuss our ADSHG resources at your next appointment

Information for Healthcare Professionals

Free GP Training module

Appointments tips & Consultation Guide

Awareness & education posters

Ask if your Trust uses the 4E to support patients: Engage, Educate, Equip & Empower

Need help with:

Concerns or problems when you're using the NHS? How to get more involved in your own healthcare? Information about the NHS? Understanding the NHS complaints procedure, including how to get independent help if you want to make a complaint? Finding support groups?

The Patient Advice and Liaison Service (PALS service) offers confidential advice, support and information on health-related matters.

Newly diagnosed?

Many of our members can relate to some of the feelings you are experiencing right now and had similar questions to ask. We're here to help!

We've put together some useful information to get you started in our guide for the newly diagnosed.

Be Prepared! Learn about steroid cards, medical alert ID and see #ShareYourKit examples from others.

Visit our Blog to read personal experience stories

Watch our YouTube videos on managing adrenal insufficiency and adrenal crisis

Try browsing our A-Z which is packed with all sorts of useful information about adrenal insufficiency, or type a word into the search box in our menu to find related topics.

Chat to others on our online forum.

Balancing adrenal insufficiency with other conditions?

Organisations that support people with other autoimmune conditions

Chat to other people with adrenal insufficiency along with other conditions on our online forum.

Visit our Blog to read personal experience stories from others living with adrenal insufficiency.

Coping with adrenal insufficiency as a young person or carer of a young person?

Visit our Children and Young Adults support pages.

Watch our CoMIC YouTube videos on managing adrenal insufficiency and adrenal crisis - all under 2 minutes!

Read our blog for personal experiences from children to university

Chat to other parents and young adults with adrenal insufficiency on our online forum.

Facing work or financial difficulties?

When An Employee Has Addison's

Information for employers

Citizens Advice: check what benefits to claim if you’re sick or disabled

Scope - Equality for Disabled People: online advice & helpline

Turn2Us: benefits calculator to find out what benefits you can claim

We offer support for those facing hardship who would like to join the ADSHG. Read about our different types of membership.

Caring for someone?

Charities that support carers

Having trouble accessing help?

Accessibility Guide for our ADSHG website

Many of our printed / online publications are available in plain text versions and transcripts of our videos can be sent on request.

Finding things on our website:

Try browsing our A-Z which is packed with all sorts of useful information about adrenal insufficiency, or type a word into the search box in our menu to find related topics.

Unable to get out and about?

Chat to other people with Adrenal Insufficiency in our online forum. Contact us if you're unable to find the help you are looking for.

Live abroad?

Find your nearest adrenal insufficiency support organisation

Latest

Jennifer's fundraising for Addison's disease

I'm raising money for the Addison's Disease Self Help Group so that they can continue to support people with Addison's and adrenal insufficiency. Addison’s is a rare endocrine condition where the adrenal glands do not produce enough steroid hormones and can be life threatening. It affects approximately 1 in 10,000 people, meaning an estimated 300 - 350 new cases are diagnosed each year across the UK, this makes it roughly 300 times rarer than diabetes.
Behind the Research: U-RHYTHM

Dr Thomas Upton updates us on the development of U-RHYTHM, a wearable device to measure hormones, including cortisol levels, in the body over the full 24 hours, following the release of their clinical trial study,
Behind the Research: The PULSES trial - Pulsatile Cortisol Infusion Pump

Dr Georgina Russell updates us on The PULSES trial, looking at the effect of pulsatile cortisol pump therapy on quality of life, mood, sleep, behavioural and cognitive processing and metabolism.
Getting the Flu Jab

Say No to Flu! Book your flu jab today. There is no need to miss out, as it is free to people who are steroid-dependent (everyone with Addison's disease and adrenal insufficiency). Dr Prete, Consultant Endocrinologist, explains more about the importance of getting your flu jab when you are steroid-dependent.

Sick Day Rules

Minor ailments can affect anyone with a steroid-dependent adrenal condition very differently. Things like vomiting, diarrhoea, colds and flu could cause an adrenal crisis. It’s important that you spot the early symptoms of a bug or cold and adjust your steroid replacement medication.
What is Addison's Disease?

Find out more about Addison's disease and adrenal insufficiency and and how they are treated.
Adrenal Crisis Can Kill
The Emergency Injection for the treatment of Adrenal Crisis

Understanding what an Emergency Injection kit is, how to inject and how important it is to use the injection during an Adrenal Crisis.
Coronavirus Vaccines and Adrenal Insufficiency

Everyone with a steroid-dependent adrenal condition should get the coronavirus vaccine and boosters to reduce their risk of getting coronavirus. This is because people who are steroid-dependent are at increased risk of needing hospital care if they get coronavirus, due to the risk of adrenal crisis.
Why Salt?

Why do people with Addison’s and adrenal insufficiency crave salty, acidic and sour foods at diagnosis, and then salt remains our “pick me up” when diagnosed? Professor Simon Pearce explains the connection between aldosterone, fludrocortisone and why you should always listen to your salt cravings.
Novel Coronavirus (COVID-19) - 02/10/2023

Our medics have been keeping an eye on pandemic developments. This page is up to date but we will continue updating it regularly as we find out more information from the government.
Updated NHS Steroid Card Released

Following the early release of the new NHS Steroid Emergency Card back in March to keep patients with Addison's or adrenal insufficiency safe during the COVID-19 crisis, the NHS steroid card has been updated and physical copies will be available to order from Tuesday 18th August 2020 for hospital teams!
Addison's & Adrenal Insufficiency: Advice for Dentists

The ADSHG guidelines offer illustrative guidance for major and minor dental procedures. It is important to recognise the physical stress of any invasive dental procedure and to ensure that adequate glucocorticoid cover is provided for steroid-dependent patients.
Surgical Guidelines

The ADSHG surgical guidelines are intended for the information of your medical team or your dentist and have been developed by our Clinical Advisory Panel.

Research Grants

Our charity is at the forefront of medical research into Addison's Disease. Help us fund medical researchers working in this important field of endocrine research. Read more